Tag Archives: school

Graduation Day

28 Jun

My Kindergarten Graduate

On Friday morning we all woke up with a sense of occasion. Especially James, my five-year-old son for whom this day was happening. He had been looking forward to it all week, and now that it was here, he could barely contain himself.

In honour of the occasion, I walked him to school myself instead of dropping him off at the daycare. Once we got to the school, he ran ahead of me to join his peers, and I joined the group of parents walking towards the gymnasium where the event of the day was being held. I secured two seats in the front row, and hoped that my husband, who was taking George to school, would arrive before the excitement started.

As I waited, there was a lot of scuffling and whispering and shhhh-ing coming from behind the curtain on the stage, as the kids were obviously brought in through an unseen entrance and put into their positions. With just moments to spare, Gerard scooted in and sat beside me.

And then it began…

The curtain opened to reveal a sight that made the audience go Awwwwwwwww in unison: a class of graduating Kindergartners, all wearing oversized white mens’ shirts that had been put on backwards, and personalized graduation hats made of construction paper.

I have to tell you, they looked cute. Especially when music was cued and the kids started singing a song to the tune of Frank Sinatra’s New York, New York (instead of singing about New York, New York the kids were singing about Grade One, Grade One).  And the cuteness just about exploded near the end of the song when the kids started doing that leg-kicky dance routine. They were very enthusiastic about it, too.

The music segued into I Gotta Feeling by Black Eyed Peas. This time the kids weren’t singing, but they were dancing. Even though it was supposed to be a choreographed dance, it somehow didn’t matter that at no point during the song did any of the kids have matching dance moves. Their energy and enthusiasm – and the fact that my child was part of it – made it the best dance I’ve ever seen.

When the music faded out, it was time for the big moment. The children were called one by one to receive their Kindergarten certificates, which were rolled up into little scrolls and tied with ribbons. When it was James’ turn, he solemnly received his certificate and then posed for the pictures as if it was an occasion in the White House. He had taken this graduation concept very seriously all week, even telling me at one point that “graduation is no laughing matter”.

So far, I was doing OK. I hadn’t cried yet. I hadn’t even needed to reach into my bag for a tissue.

The kids were brought down from the stage and they were ushered to pre-assigned seats in the auditorium. A projector screen appeared from nowhere on the stage, and in a slightly alarming move, one of the teachers started handing out Kleenexes to the assembled parents. “You might need these,” we were told.

The lights were dimmed and the show began…

It was a photo montage of the kids’ school year, and it was absolutely beautiful. The pictures of James showed a kid who was happy, social, and doing really well. My heart burst with pride.

Yes, I cried. So did all of the other parents. The person who was probably crying the hardest at the end of it, though, was the teacher. She clearly cares about every child she teaches. And that shows in how well the kids have done, and in how excited they are to be in Grade One.

The day could not have been more perfect. So what if the singing wasn’t exactly in tune? And so what if the kids chose, on the day, to dance to the choreography inside their own heads? We, the parents, had the privilege of seeing our kids being the wonderful, spontaneous human beings they are.

We saw them being themselves, and it was the best thing ever.

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The Wheels On The Bus Go… WHERE?

14 Apr

The start of the next school year in September is going to be a big time for our family, as both boys make the leap to full-time school. In August, George is being discharged from the therapy centre where he currently spends his mornings, and James will be graduating from half-day Kindergarten and going into First Grade. It is a big adjustment for both boys, and although I expect some fallout, particularly from George, I am not too concerned. I have faith in both of the boys’ schools.

It’s the school buses I’m worried about.

For James, this isn’t an issue. We live too close to his school for buses to be in the picture for him (much to his disappointment; James would love to ride in a school bus like his big brother).

George, on the other hand, needs the bus, and four years’ worth of problems in the school bus system have taught us a very unfortunate fact: when it comes to scheduling school bus runs, special needs children are treated as an afterthought. The children who do not have any disabilities – in other words, the ones who as a rule are more adaptable and resilient – have their scheduling sorted out very early on in the school year. And the children who do have disabilities – the ones who are vulnerable, have higher levels of anxiety and more reliance on routines – easily spend six weeks or more being picked up at different times, by different drivers, and spending inordinately long periods of time on the bus, while their parents try to figure out what is going on.

Like most parents of young children, I want to know where my kids are at all times. I want to be able to know that at this time, George is on the bus, or at that time, James is eating lunch at the daycare. I do not want to be wondering whether or not George is still at the therapy centre and why the school is calling me to ask why he hasn’t shown up yet.

Last year, right after the Thanksgiving weekend, there was an incident with George’s bus that, while turning out OK, could have had terrible consequences. At that point, we had struggled with the bus company for almost two months getting George’s schedule worked out, and we thought that it had finally been resolved. George was being picked up at a consistent time from the therapy centre by a driver he knew from the previous year, and he was spending half an hour at most on the bus before being dropped off at school for the afternoon.

On the first day back after the Thanksgiving weekend, George was picked up at the usual time by the usual bus driver. He was driven to school.

The only problem was this: it was the wrong school.

Thank goodness George had on a seatbelt lock, which prevented him from getting up, walking off the bus, and getting lost or worse. Thanks to the seatbelt lock, someone had to actually get onto the bus to remove the seatbelt.

The teacher who took George off the bus didn’t know what was going on. She took the driver’s word that George was supposed to be there. It was only when the driver had left and George was standing in the principal’s office with a confused babble of grown-ups surrounding him that someone realized that a mistake had been made.

For a regular kid this would have been bad enough. For a child with autism who is afraid of people and places he doesn’t know, and who has severe communication impairments, it was downright traumatic.

Somehow the principal figured out who George was, and through a series of phonecalls, was able to figure out where he was supposed to be. A child’s booster seat was dug up from somewhere, and the principal bundled George into his car and drove him to the right school.

It only then, when George had arrived at his own school, that someone thought of calling me and Gerard to tell us what had happened. Up until that point, we had been completely oblivious to all of this.

While we were unbelievably grateful to have our child home safe and sound at the end of that day, we were haunted by thoughts of “what if”. The thoughts of “what if this happens again” prompted us to spend the next few weeks trying to figure out what the hell had happened.

We never did receive satisfactory answers. We do know that the bus driver was not at fault, that she was given the wrong information from higher up. We also know that in said higher-up’s attempt to avoid responsibility, the bus driver was relieved of her duties. There were no attempts made to figure out what had gone wrong so that steps could be taken to prevent it from happening again.

And in a few short months, we are going to have to fight a new battle for a new school year.

(Photo credit: http://www.flickr.com/photos/alextakesphotos/149198520)

The T-Word: A Scary Word For Autism Parents

13 Apr

This morning heralded the beginning of a new phase in my life as a special needs parent. We met for the first time with George’s transition planning team to sign the paperwork that kicks off the process of transitioning him to full-time school.

Any parent of a child with autism will tell you the same thing: that the word “transition” is one of the scariest words in the English language.

“Transition” means that the routines that pretty much hold the world together for a child with autism are about to be turned upside down and inside out.

“Transition” means that there are likely to be meltdowns, that for a period of time my child’s anxiety will be mirrored in his eyes in a way that will make me want to weep, and that the entire family will be without sleep as George makes the adjustment to his new reality.

Despite the fact that this is a process that makes me fraught with anxiety, it is a positive thing. When he started IBI therapy two and a half years ago, George did not have a lot of skills. He had virtually no vocabulary, no self-help skills, he couldn’t follow directions, he couldn’t interact, his emotional regulation skills were nowhere, and he had all kinds of fears that made his life very difficult. There was always a spark in him, though; a light in his eyes that made people sit up and take notice.

After two years of full-time therapy, the progress in this child was off the charts. It would be a stretch to describe him as fully verbal, but he was making requests using full sentences, he was starting to interact in a limited way, he was no longer afraid of the dark, he was starting to verbally express emotion, he was able to follow instructions with multiple steps, and in a giant cognitive leap, he had started to display his quirky sense of humour (deliberately being funny for the purpose of making other people laugh is huge. HUGE!)

And so, six months ago, the decision was made to cut his therapy in half and graduate him to the next program up. Instead of traditional IBI therapy, which is intensive one-on-one programming, he is now in a School Stream program, which is conducted in groups of five. It is a simulated classroom environment, designed to help children with autism learn the kinds of skills needed in school. There is  teacher who leads school-type activities, and each child has his or her individual support person to help with prompting and reinforcing.  The children in this program attend School Stream for half of the day, and actual school for the other half.

It has proven to be a very effective program for George. It has helped improve his social communication and interaction skills – areas that remain difficult for him, that traditional IBI therapy is not designed to address.

And now, effective from September of this year, George is being deemed fit for full-time school. This is a testament to the progress he has made, both in IBI and in School Stream. His teacher at school, who has had him half-days for the last six months, is excited to take him on full-time, and he will be with her for at least two years. At our last meeting with her, she had glowing things to say about George. He still struggles intensely with social communication, and he is not nearly verbal enough to hold his own in a conversation, but academically he is flying. He has developed the skills to function, and function reasonably well, in a classroom setting, even if it is a modified classroom designed for children like George.

That George is ready for this transition is a positive thing indeed. It is something that makes me so proud of him. He has had to work so incredibly hard to get to this point.

But still.

The process of transition is not going to be easy, which is why the planning starts six months before the transition takes place, and does not end until six months after the transition has happened. This morning’s meeting with the transition planning team was the first of what will be many. From what we’ve been able to tell, there will be good supports in place for George and for us over the next year, in order to ensure as smooth a transition as possible.

I cannot help being anxious about it, though. George’s departure from the therapy centre will mean the removal of a layer of support that we have had for the last three years, and although George might be ready for it, I don’t know if I am.

I might just have a harder time with this transition than George will…

(Photo credit: http://www.flickr.com/photos/misskprimary/1038145678)

Vaccination Vaccilation

8 Mar

Several weeks ago, I got a letter in the mail from Toronto Public Health, informing me that if George’s vaccinations weren’t brought up to date, he would be suspended from school. There is a series of shots that he was due to receive when he turned six, and due to a number of logistical factors, including the retirement of our doctor and George’s phobia of anything medical, we just hadn’t gotten around to getting them. I called the number listed on the letter and spoke to a very nice lady who told me that the six required vaccinations could be administered with just two needles.

While two shots certainly seems more manageable than six, we have still not been able to get this done. Since our doctor retired, we have still not been able to get another one. There is a dire shortage of doctors in Ontario, much less doctors who are good with children who have autism. There is a walk-in clinic that we’ve gone to frequently enough for them to know us, and they do carry all of the vaccines, but it’s one of these first-come first-served places.

Jabbing needles into the arm of my child with autism is something that requires epic planning. We would have to find a doctor who we could make an appointment with. We would have to secure the very first appointment of the day to guarantee no waiting. We would have to prepare George, ourselves, and the staff at the doctor’s office. The whole thing would have to be done much like a military strike: go in, do what needs to be done, and then leave.

You can’t do that at a walk-in clinic. There, you show up and wait your turn, which could give your child up to two hours to have a complete meltdown and make dents in the drywall with his head (I ain’t kidding about that, by the way).

In between our phonecalls to locate a suitable doctor, we have been doing research on vaccines.

I should say at this point that I have never believed in the connection between autism and vaccines, and I still don’t. Whenever I admit this within my autism circles I create a bit of a stir, because it would seem that most people do not agree with me.

I would never presume to speculate on what does or does not cause autism in other peoples’ children, but looking back, I knew that something was not right with George from a very young age, before vaccines even entered the picture for him. If I were to guess at the root of the problem, I would say that it is a genetic roll of the dice combined with certain dietary elements.

Much to the horror of many parents (whether they have children with autism or not) I chose to vaccinate James even after I knew about George’s autism.  That’s how much I do not believe in the vaccine/autism link.

So the research we have been doing is not from an autism angle. It is from a general health and wellbeing angle. Some vaccines apparently (depending on which websites you believe) contain potentially toxic ingredients that really don’t need to be there. These ingredients can do things like challenge the immune system and create a propensity to getting mild upper respiratory complaints.

And as convenient as it may be, we are debating the wisdom of administering three vaccines per needle, all in one session. That is a lot of stuff to be putting into the human body all at once. I’m no doctor, but I’m not sure that the human body is designed to be blasted in such a manner.

We fully intend to get all of George’s shots updated. We may just take our time and spread them out. It will involve more trauma for George, but there is a chance that it will be better for his long-term physical wellbeing. When James turns six, we will have to make the same decision for him.

In the meantime, while we are waffling around trying to decide whether to get George his shots, the Toronto Public Health deadline is upon us. With just two days to go until imminent suspension, we decided to apply for an exemption. We completed a Statement of Conscience, which basically says that we believe vaccinations are not the right option for us at this time.

It just buys us a little time to do this properly, without pressure bearing down on us.

 

One Step Closer To Normal

14 Feb

Life is one step closer to normal today.

James has rallied back after his week-long illness and is back at school today. It completely failed to register with my overtaxed brain that today would be the day to send in Valentines cards and treats for him to hand out to his classmates, but I don’t honestly feel too bad about that. I’ve had other things on my mind. In any case, James will no doubt get a lot of attention today.  He is immensely proud of the tiny little bruise on his hand where the IV line went in. He is going to show the bruise to his friends and tell the tale of his hospital adventures. I’d say the kid has earned the bragging rights.

George is still home, but he hasn’t thrown up for about thirty hours. He ate jam sandwiches yesterday, and right now he is digging into the scrambled egg that he requested. He has colour in his face again – a colour other than pure white, that is – and he is chatting away in his own little autie language. He seems happy, and definitely better. He’s getting one more day at home to recover his strength.

Gerard and I are at home as well. Both of us feel a little drained and weak, but we are also on the mend. My system is still very delicate – so delicate that I am, for the fourth day in a row, voluntarily foregoing coffee. Those who know me and my love for caffeine will appreciate just what a sacrifice this is.

Even though I am at home, I am well enough to actually work. Tomorrow I will go back to the office for the first time in almost a week. I’ll feel like Marco Polo must have when he got back from China or wherever it was he went, except that I won’t have boatloads of tea and rice with me.

After my return to work, I will be able to think about the next big thing. Running. Oh, how I miss running. How badly I want to lace up my running shoes and go out in the crisp, cold air and feel the crunching of the snow beneath my feet as I run.

If I try that today I will throw up all over that nice pretty snow. I have to be sensible. It will probably be Thursday or Friday before I try running again, and when I do, I will have to start out slow.

I won’t even care about being slow. I just want to be out on the road again.

And for everyone in my family to be able to go to bed at night without a designated puke bucket on the floor beside them.

A Case Of Faint Religion

14 Jan

This coming Sunday, I will be going to church. The last time this happened, it was to attend the funeral for Gerard’s 103-year-old grandmother.  I have been to church maybe ten times in as many years, and there has always been a specific reason for it, like a funeral, a baptism, or a wedding.  I’m not what one might refer to as “the churchgoing kind”.

When I was about sixteen, I had a firm belief that I had developed an allergy to churches.  This was based on a very strange trend that started at this age: every time I went to church – EVERY time – I would faint.  Whenever the congregation was called upon to kneel, for whatever reason the blood would just rush from my head and I would be out like a light.

There was a medical reason for this, of course, although I cannot remember now what that was.  I went through a somewhat inconvenient few months where I would faint at the drop of a hat, whether I was at home, in a store, or in math class.  Presumably I wasn’t allergic to all of those places as well.  What convinced me, though, was the absolute regularity of it.  When I went to church – any church – I could be completely relied on to faint and disrupt the proceedings.

I had a theory about this.  See, I was educated at a girls-only Catholic school run by nuns (some of the nuns were very nice, but some of them were MEAN!). Every week, all of us – including the non-Catholics like me – had to attend these religious education classes.  And on the first Friday of every month, the entire student body would troop over to the nearby Catholic church to attend “First Friday Mass”.

In addition to all of this, I was a Sunday school teacher at the Anglican church my family belonged to, AND I went through a phase of regularly attending the Evangelical church that my parents referred to as “happy clappers”.

That’s three – count ’em – THREE churches that I frequented on a regular basis.  That’s a whole lot of religion for a teenager.

My theory was that overexposure to religion had given me an allergy to churches.  Kind of like the time I got 67 beestings in one go and ended up with an allergy to bees.

Because I was allergic to churches and all, I stopped going.  I mean, it was hazardous to my health.  Everyone knows that if you expose yourself to something you’re allergic to, the allergy gets worse and worse.  I just assumed that my church allergy would work the same way.

I couldn’t get out of the First Friday Masses at school.  The nuns were very weird about that.  If a student had an accident and ended up with, say, a severed arm, the nuns would definitely take that student to the hospital.  Right after the student had attended Mass with the severed limb sitting there on the pew.

As an adult, my church attendance has been limited to events like weddings and funerals.  When the kids were born, we joined the local Anglican church so we could get them baptized (what they do or don’t do with religion as they get older will be up to them).  And now, with my own wedding coming up at the end of April, it is time for us to do the church thing again.

When we first started making the wedding plans, I was never really gung-ho on the idea of getting married in a church, particularly since we’ve been living in sin for the last ten years.  It didn’t really make sense to me: Gerard is a non-practicing Catholic, and I am a lapsed something-or-other.  We try to live our lives as good and decent human beings, and although I believe in some greater force, a Karma of the Universe type of thing, I don’t really believe in God in the traditional sense.  When bad things happen to people I care about, I pray for them, but I am not praying to a Biblical God.  I am praying to the forces of energy that shift the Universe around and affect the way things happen.

When I talked about not getting married in a church, my future mother-in-law almost cried.  She is a devout Catholic, and had been holding out hope that we would get married in a Catholic church.  I went along with it, because honestly, I don’t care where I get married. As long as I’m a Mrs by the end of my wedding day, I’ll get married in a bus shelter if it makes people happy.

The Catholic church did not turn out to be a feasible option, firstly because the Catholics are a bit picky about presiding over a marriage where one partner is not a Catholic, and secondly because we don’t like the priest at our local Catholic church.

So we went back to the Anglican church in our neighbourhood, to talk to the same minister who baptized my boys.  We had a lovely long chat with him this week, and he told us that he would be happy to preside over our wedding.  We would be happy with this as well: the minister is really a lovely person, and the church is a welcoming, neighbourly type of place.

We will be going there on Sunday, because we feel that if we’re going to have our marriage blessed in a church, we should at least take the time to show up, hear what the sermons are all about, and get to know some of the people.  We do not want to observe such an important day of our lives in a place where we are strangers.

I just hope I don’t faint.

Letting Go Of The Training Wheels

10 Jan

In September, my son George will be making the transition to full-time school.  For two years, he was going to school one day a week (he is in the “mild intellectual disability” program at the public school), and for the other four days he was going to the therapy centre to undergo IBI.  For those not familiar with the term, IBI stands for Intensive Behavioural Intervention.  It is intense, one-on-one therapy based on prompting and rewards.  It can be used to teach social skills, daily living skills, routine, pattern recognition, and many other things.

Under IBI, George’s progress was off the charts.  He did so well in the first year alone that he made 23 months’ worth of gains in a twelve-month period.  The second year saw similar improvements, and the tiny spark of hope that had been present in me and my fiance bloomed into this kaleidoscope of possibility.  George can be held up as a shining example of what many kids can achieve in IBI.

After two years, though, it was time to move him to a new level.  The one area where George was not making significant improvements was in his social interaction skills, and IBI, by its nature, does not address this deficit very well.  IBI is one-on-one, and George needed to be in a placement that would involve group interaction.  He was also having trouble following school routines.

He was placed in his current program, which is called School Stream.  He spends every morning at the same therapy centre where he received IBI, in a simulated classroom setting with four other kids.  There is a teacher, and each kid also has his own one-on-one support person. The kids do school-type activities, like raising their hand to answer questions, participating in circle time, taking turns, and playing interactively in the gym.  At lunchtime, the school bus picks the kids up and takes them to their respective schools, where they spend each afternoon.

It’s a great program.  The School Stream in the morning and actual school in the afternoon are complimentary programs that reinforce each other and allow for a crucial element: the transferrence of skills to different settings.  We are seeing George progress in different ways.  His teacher at school has reported that he is now following school routines with very little problem, and everyone involved with him is seeing a big increase in speech.

The kid’s probably never going to be big conversationalist, but he is at least functionally verbal, and for George that is a step that is big gigantic equivalent to man walking on the moon.  Academically, he is performing so well that his teacher is now describing him as high-functioning.

There are still challenges, and there probably always will be.  George has a resistance to change that is problematic. Picture extreme tearful anxiety when a lightbulb burns out or when the coffee machine is three inches to the left of where it should be.  There are various meltdowns and anxieties that do not make sense (to us; they probably make perfect sense to George).  We would still like to see him talking more, interacting more, coping with sibling rivalry in a way that does not involve him headbutting his little brother.

But as hard as the challenges can be, they are overshadowed by all of the phenomenal accomplishments that we have seen in George, thanks first to IBI, and then to School Stream.

George will be exiting School Stream in August, and from September, he will be spending all of his school time in actual school, and our three-year involvement with the therapy centre will end.

This is causing me a great deal of anxiety.

It’s not that I think George is not ready.  It’s that think I’m not ready.

The therapy centre represents an avenue of support that has been a part of my life for three years.  I have had many, many conversations with the therapists and supervisors there, and they have given me so many great ideas and strategies for dealing with various things.  They have arranged parent education evenings that have given me valuable information and new ways of looking at things.  And to be fair, they don’t just discharge their kids and then forget about them.  They do have a support program that lasts for six months after the transition to full-time school.

But still.  This change, while being necessary and timely, represents a letting go of support.  It’s like finding yourself without training wheels when you still feel unsteady on the bike.

And this Mama just ain’t ready for that.